You won't believe this

[Guest Julia59]

You won't believe this----after getting psyched for the bone scan I got a call from The Medical University of Ohio saying there is a SHORTAGE OF THE RADIO ACTIVE DYES USED FOR THE BONE SCANS---OR ANY OTHER TESTS THAT USE THAT MATERIAL!

I called the Cleveland Clinic to see what else can be done. The doc wants to check to see if my bones fused properly after my cervical spine surgery that I had in June 2002.

I don't know what other testing that could be done to check this other then MRI. And contrast will definately be need for that as it is difficult to see the area due to the titanium plate. Dr. Heffez did say the bones were fusing nicely according to the MRI and x-ray I had after the surgery. The x-ray was done a month after, then another three months after. The MRI was six-to eight months after.

UGGGGGGGG----I have so much pain in my upper back and neck---and into my lower head-----It's difficult to breathe. My breathing feels restricted----especially when I move my neck in various positions.......

all I can do right now is wait. they may have some of the RO dye in a few weeks.

Can you believe it----A NATIONAL SHORTAGE OF RADIO ACTIVE TRACERS!

Julie :0)

[katie_b]

Wow, I have never heard of a shortage of tracers!! Can't they just make more?? I'm not sure what it's composed of, but there has to be a way to make it!!

I'm sorry you can't get the test done as soon as you wanter (if I understand right). That is so hard to believe. I wish I could do something to help!

[dizzygirl]

WOW! Julie tha is insane!!

a shortage of dye.. I have never heard of that.. WEIRD!!!!!!

[Guest Julia59]

I have never heard of it either-------------------From what I understand it's a national shortage....

I suppose if you call any hospital ----they won't have it. And it will be several weeks until they will have any. Very weird. The Medical University of Ohio is the hospital that called me with the the news. This is also the hospital where Dr. Grubb's office is. I heard that MUO is merging with The University of Toledo-----for Medical Academics Classes.

Any nuclear testing using the tracer can't be done. I can't imagine the revenue lost for some of these hospitals. It is so odd----isn't it........? I don't know why they couldn't make some---I imagine it's a shortage of one of the materials used in the tracer.......i'm not sue. I will ask them about it Monday as I will be at the MUO that day.

Julie :0)

[Sunfish]

gggggrrrrrrrrrr.....how frustrating

and after having to really psych yourself up for the whole thing too....

it's really almost comedic (in a not so funny way...)

hang in there,

melissa

[Ernie]

Hi,

I don't think it's true.

I think it's because you cancelled your appointment at the last minute and they don't want to give you another appointment.

[Guest Julia59]

Ernie, I did not cancel my appointment at the last minute---at The medical University of Ohio. My appointment was set at St. Luke's before----I cancelled very early in the morning. I had to pick up my Dad at the hospital Monday----that was the day my appointment was scheduled. My mother can't drive anymore---so I was the only one available to help out. I called St. Luke's at 6:00am---they had no problem with my cancellation. I have had many tests there. I then had my MRI at St. Luke's on Wednesday----but couldn't have the contrast due to BP being all over the place---and the tech said the pictures would be fine without it as I don't have any scar tissue in the thoracic spine.

When I rescheduled my Bone scan appointment is was at the Medical University of Ohio for this Monday. I will be there that day anyway, so I scheduled it for then. The gentleman was very nice when he called about the shortage----and I magine they can't lie about such a thing (on monday I will double check). My appointment was NOT cancelled from that hospital. I have been under a lot of stress lately for many reasons---and more then likely this has caused a ton of anxiety---thus my fear of more tests that may stir up some more ANS symptoms----I'm already on the edge now-----sooooooooo

However, I bit the bullet and rescheduled anyway because I need to find out why my spine feels like it is falling apart. I'll have the flexation/extension x-ray Monday---this is also one of the other tests ordered from Dr. Benzel.

Again---I don't think a professional from a well known university hospital is going to cancel an appointment----even if that was the hospital I cancelled from-----just because I had an emergency and had to cancel. Now if I made a practice of this---WHICH I NEVER HAVE---I imagine someone from scheduling would call me and explain that they can't schedule anymore appointments due to last minute canceling practices.........

I don't think they would conjure up a story about a National Shortage of RO tracer just because I cancelled one time in my life on the same day as the appointment. And because it wasn't the hospital I DIDN"T cancel the appointment from---I tend to think it is true.

The only hospital that knows of my recent fear of testing is The Cleveland Clinic---I had talked with the nurse at Dr. Benzel's office on Tuesday---and also his secretary. They were very understanding and told me I didn't have to do anything that I thought might make me feel worse. I told them that I was going to go ahead with the testing as my symptoms have been so bad----and the pros were out weighing the cons----and I need to get down to the bottom of my health issues. They were very nice---and they didn't make me feel like a fool. I was the only one who made me feel like a fool---I was upset with myself over the whole mess. My pain has been so bad that I feel sick from it.

I am really really disgusted with the whole mess.

The main ph# to the hospital is 419-383-4000----nuclear medicine is 419-383-5125.

Julie :0)

[Guest Finrussak]

Hi Julie

Just a thought...can they compare the MRI you just had ( and of course previous ones post surgery) with spiral CT scans and/or x-rays??? The CT is faster and not in a closed tube...plus not necessarily need tracers...yes the tracer or dye CAN make it easier to read but there are MANY pts who cannot tolerate them and they simply have to get a very experienced radiologist to more carefully read them...it CAN be done!!!!! (why am I so sure? well, I am one of the ones who can not take any dye or contrast except for 2- mri galladinium and octreotides for octreoscans...and my Drs have made special arrangements for many tests like CT to be done "blind")

What area did the MRI done the other day picture? As much as you dont want another one,...maybe they can re-do for the cervical region ( and while in there this time make sure they do the whole spine!!! they can ask for a spine series...skull to tailbone--again I had several...found dural ectasias which are loose out pockets of the connective tissue covering the spine...can cause pain and many of the sx you have and is related to the EDS/JHS...NOT saying you have this...just mentioning why MY sx are there)

this way youre dx isnt held up...and its very true...about shortages of nuclear stuff...theyre very controlled substances, are ordered somewhat infrequently and if there is a backlog or if the imaging center runs low...they hoard for emergency/urgent cases until more is ordered....I have a friend who is a radionuclear med tech and another whose husband is an US technologist/supvr. Plus it happened to me about 3 years ago when I had to travel over 3 hrs to find a place for the first Octreoscan.

Good Luck!!!

[Guest Julia59]

Thanks Finette,

I have a whole series of past MRI's of my full spine---even a CINE MRI. The closed tube doesn't bother me that much---I have been in them many times---one time for almost two hours---they did my brain, cervical, thoracic, and lumbar spine all in one shot at The Chiari Institute. Dr. Benzel see's the cervical stenosis and small posterior fossa--(skull area)---basically stenosis on the brain stem. He is checking the cervical/cranial instability again---and he said he wanted to check the thoracic area because of the EDS. The Bone scan is to check and see if the bones are fusing in my neck. I think he compared most of the films---but he seemed fairly dismissvive on the seriousness of it all at first---but then he took a second look---and ordered these tests. I have a confirmation that I have EDS by all three NSGs---and Dr. Grubb. It's pretty bad---my whole upper body is shifting around.

I did have a CT scan in Chicago---this was with the dye---I did OK---but flushed when the dye was put in the vein. The tech doing the test tore up my arm with the needle----I kept telling her to use the vein on the back of my hand---finally the other tech who was a man---just took the needle away from her and popped it into my hand. The CT scan showed the cervical spine stenosis more profoundly----Dr. Benzel did not see this film. I never ordered a copy of the CT scans---just all the MRI's from Dr. Heffez (The Chicago Institute of Neurosurgery and Neuro research)---Dr. Bolognese-(The Chiari Institute)---and the films done here in Toledo from St. Luke's---and The Medical University of Ohio. There are some x-rays after my surgery---I think two of them---you can see the plate and screws in my neck. I sould get a copy of the CT scan and send it to Dr. Benzel. I'll call Chicago next week. I'm glad you posted----ti reminded me of that CT scan---I only have the report.

I know I don't react to the CT dye---at least I didn't in 2002. I'm not sure what they are going to do now----but there will be an X-ray done on Monday---I don't need an appointment for this. I just walk in and give them the order. I'll need to do flexation and extension----This will no doubt make my symptoms worse for a few days---but I know what to expect. As far as another MRI---I suspect another one will be taken of my cervical spine. Or maybe another CT scan-----with the dye---this will show more I would think.

I know the CINE MRI that measures cerebral spinal fluid flow showed a partial blockage posteriorly---Dr. Benzel only saw the film---but didn't see the report. I don't think my testing is over-----UGGGGG

I've had a lot with now problems----just recently I have developed fears and anxiety---I don't know why---I'm just tired I guess, and the pain has been so bad it literally wipes me out. It was very hard to sit still for the MRI on Wednesday---they had to do the last set again-----------I had arched my back from a spasm....screwed myself up on that one......Fortunately it was only a 2-3 minute set.

Thanks for the information about the RO tracer---I didn't know much about it---and that there could be a shortage for weeks at a time. Something I never thought about. Thanks for your help---I really appreciate it----

Julie :0)

[Guest Finrussak]

Hi Julie

another thought ( sorry but some nites they flow and others...nothingLOL) anyway have you asked for copies of EVERY film and study taken and kept in your own personal file??? I hjave done that in the past 12 months and now save myself a lot of testing by bringing films etc to everyone so they can see every study...u wouldnt believe how much grief and repeat tests its saved me !!! keep the reports separate again in ur own file..to be fwd as necessary. I wonder with all the connective tissue issues, that u havent had an ectasia dx...especially given the EDS stuff.

[Sophia3]

Julia

That is truly unbelievable there could be a NATIONAL shortage of this dye? Isn't this used to document MANY MANY types of problems?

I just wonder if the guy talking to you couldn't have been misinformed. After dealing with hospitals when my elderly mom was hospitalized this year, ANYTHING is possible. You can't believe the wrong bogus info we were given.

THAT said, I was once told during the Gulf war i could not get my gamma globulin prescrptions filled as there was a national shortage...or SO my then CFS doc told me. They were shippiing it over seas and everyplace around here was back ordered. I did call my pharmacy at the time and they claimed it was true.

So who knows. back then, anti virals were used for the flu like symptoms. It helped me at first and then lost affectiveness. Plus the stuff had the thickness of Karo syrup tho I still use the huge needles for B-12 but I digress.

I am sorry you got psyched for thiis only to have this happen. Stay in touch with the schedulers. When looking online earlier I could not find anything about a National Shortage of this dye but I don't know the proper medical lingo to put in t search engine.

Good luck and hang in there.

[Laura]

Hi guys, About a year and a half ago I wasn't able to get a re-fill on my epi-pen as there was a shortage apparently in Canada. Anything is possible! Laura

[Ernie]

Hi Julia,

I don't kow the American Medical system but here in our Social Medical system if you cancel within 24 hours of an appointment it is called cancelling at the last minute. When you do so you get last on the waiting list which means waiting another 6 months to 2 years. The only reason they will reschedule ealier is if you were hospitalised at the time of the scheduled appointment.

If you don't cancel your appointment and don't show up then you will never get an appointment again. They put you on a black list.

As for lying they do it on a regular basis!

Different systems different rules!

[Guest Julia59]

I'm sure the guy is telling the truth----he said it would be about four weeks---maybe a little longer. Hopefully it will be before my appointment with Dr. Benzel on January 23rd. I'll see the CSF specialist on Dec. 22nd. He took my phone number as they will run the testing on the people who were already scheduled first---then test the others after that.

Ernie---our system is not like that---and I have never cancelled an appointment in less then 24 hours until this past Monday. This was to pick up my Dad from the hospital---and St. Luke's had no problem at all---otherwise they would have cancelled my MRI-----

I looked on the MUO web site and did not see anything about a shortage of the RO tracer---but the web site news was updated on the 16th----so i'm sure it will be added to the updates.

Finette----what type of ectasia are you talking about? I tried to look it up, but several types came up.

Does it have something to do with your vision?

I'll be there Monday----so I can always go straight to nuclear medicine and check it out.

Julie :0)

[Guest Finrussak]

Julie...spinal dural ectasia...different from the usual brain dural ectasia. same covering ( dura) and same description ( ectasia as you know being a loosening or pooching out) but around the spinal chord which is covered by pretty much the same connective tissues as the brain. These fluid filled (with CSF-cerebro spinal fluid like they get in spinal taps) pouches are like aneurisms and can be large enough to press on the nerves wreaking havoc...My neuro guesses that mine in the thoracic area may be causing some of my abdominal pain and malabsorption stuff....I have a few in thoracic/chest area, 1-2 lumber and I also have sacral cysts...another name I cant remember...just checked my emrgency sheet..."sacral Tarlov cysts"...that some sites claim to be harmless, others recommend surgery...but for most part, other than the lower Tarlov's I havent seen anything re: surgical fixing plus its so darn risky anytime you cut near the spinal cord!!!

Hi Ernie

Unfortunately due to episodes or my son's poor health I have had to change appts far too many times...and sometimes within hours of the scheduled slot. I try to be honest with reception and often they understand. Some Drs. offices do have a cancel policy which means charging anyway...but for the most part, diagnostic places ( imaging studies, hospital labs etc) are so overbooked anyway that Ive never yet come across such a charge. I always get the next available slot...which can be within days or longer depending upon the schedule and the urgency written on my Rx. MY biggest problem is educating them to my condition and that waiting in the wait room for more than 20 minutes may provoke an episode, and that I prefer to phone ahead for a heads up on how far behind they are...to arrive appropriately; and even may have to lie down in a spare room or in my car awaiting service.[sitting for me is more problematic than standing due to an overly reactive vagal abdominal complex...sitting make me go brady then CLUNK yet standing has BP drop and CLUNK...fun]

Most people here in the US dealing with healthcare thankfully realize that its a "service" industry dealing with mostly ill people whose lives arent always conducive to strict scheduling rules!!! There ARE a few who dont get it, but usually a well placed complaint to the Dr in charge or administration will either fix things or if not, I then decide to choose another provider. The freemarket competition system does have its advantages. But then again from what I hear your system can be a Godsend for those unable to afford what would be private care here.Or the fact that all have health insurance which for some Americans is a luxury!! Pros and cons with every system, right?

[Ernie]

Hi Firusak,

Our health system has nothing to envy. We have about the equivalent to your Medicar or Medicaid. We have to wait from 6 months to two years before seeing a specialist or getting a test done. Many people don't even have a doctor because we don't have enough of them. The only way they get medical care is when they go to the ER.

I have lost many doctors or other health care provider because I cannot wait the 2 hours most of us have to wait in the waiting room. We are not permitted to wait outside the waiting room because we loose our turn! Because of that I have fainted often in the waiting room and lost many specialists because they have so many patients that they just don't care dealing with someone who is as sick as I am. I have asked to lie down in another room and was refused even in hospital.

The only reason why I am now able to wait the 2 hours is because I have a reclining wheelchair.

I even have some doctors that I need to call 2 days ahead to confirm the appointment and if I don't it is automatically given to another person.

The doctors cannot charge us if we don't show up because it's the government's money so this is why they put us back at the end of the waiting list or on a black list. It is written in many appointment slip that we have to cancel at least 24 hours ahead. This is a common practice here.

When you call to get an appointment you wait for months and months (average 6 months) and then they send you a letter in the mail giving you the appointment. If the date does not suit you you have to wait another 3 months or so to get rescheduled.

All my health care providers treat me mostly for the syncopes and even knowing the severity of my problem I lost at least 8 of them because I fainted about 2 hours before the appointment. I also got refused for some tested, ie at Vanderbilt, and other places in Canada because it is too much trouble to test me. So now, when I go for testing I have to minimize my case and let them discover "the surprise" after the fact ad hope that I will get my IV. That's the only way I have been able to be tested lately. Last month, after the test the nurse told me I should have told her that I had a syncope problem. I was being tested for standing catecholamines. I asked her "why". She said: "We would have refused to test you!". I was shocked because I always believed that we are suppose to be tested when you are sick not healthy. So for them, it is too complicated to give me an IV after a test so they just don't do any test.

I have had 3 specialists refuse to test me within the last 3 months because I need an IV after testing. They told me it is too much trouble. I finally convinced one of them to test me and he agreed on the condition that I am not fasting, I take my meds, I don't ask for an IV and I lie down on the stretcher. How is the accuracy of that test for the standing catecholamines? On the report they write that I was standing and in reality I was lying down. So this screws up my test and then they say I am healthy.

I have received medical treatment in the States and it is 10 times better than ours. If you would visit our hospitals you would believe that we live in the third world countries.

We don't have laws for research on rare disorders so when someone like me goes to a doctor they are just not interested. I have been told by many doctors that my case it too much time consuming and not worth the effort.

I have lost 3 years being bedridden because no doctor cared about testing me. I had to go to Dr Grubb and Dr Goldstein to get a disagnosis and treatment.

Our health care looks good from far away because people think it's free. It's not free. We pay high taxes and we don't have the choice of what kind of healthy care we get. Doctors are provincial employees and many of them don't have much motivation. If they make a professional error the government is responsible for the payment so you as the patient are lucky to get some money (and it takes years).

That's only part of my own experience. I could write books on it. I'll stop for tonight!

Sorry to be negative but I want to share my reality!

[Guest Finrussak]

Hi Ernie

WOW I had NO idea of the magnitude of the problems!!! I wasnt envious of the supposed low cost...its just that 2 friends of mine had gone thru the medical school system in Canada and painted a rosier picture. Of course they have since returned to the States so maybe they were not aware OR maybe wanted to come "home" to the free market fee system?!?

Plus I had at first confused you with living in the UK...altho there I hear things arent that much better.

Your nightmare sound a lot like the ones we Lymies are living despite being in this system!!! Especially for managed care like HMO. If they dont think youre ill, or ill enough, or should be cured after 3 scant weeks meds; youre shuffled around and denied tests and appts!! Once you have a political illness...all bets are off.

I am glad you can get to Dr Grubb etc...at least. Do your local Drs work with what the States' specialists say at least>>> and Maybe you OUGHT to write that book!!! Uncover whats really going on...All it takes is one person to change the system. Look at Love Canal NY. in the late 1970's!!!

I hope things are better for you soon

Finette

[Ernie]

Hi Finette,

Thanks for being understanding.

I am slowly finding a few doctors willing to investigate my case. They believe the NIH report but some of the tests now have to be redone because I went 2 years ago and they want to make sure that I am "still sick". For example, I have to do another blood volume test in 2 weeks before they will accept to prescribe Procrit. I am glad that after "interviewing" many doctors for "the job" 2 or 3 are interested in my case. The funny thing is that they are all researchers and they consider me their "project". I don't mind, as long as they help me.

I am not saying that all doctors are bad but I really have to look for ones that like challenges!

I am seriously thinking about writting that book because I think the public should be aware of what is going on in the medical system. I believe there will be one book just for my medical experience. I think I am waiting to get the diagnosis for the muscle weakness/paralysis and then I will be free to write.

[Guest Julia59]

Ernie------

That is great that you have found 2 or 3 Doctors interested in your case who are researchers.........considering you don't have laws for research on rare disorders. These guys just stepped up to the plate----but what a job it was getting them there....

We are very fortunate here in the states---but not always..............I see sub standard care all the time for those who are on medicare---and especially those on medicaid. As you can see form my other post I had a very close friend who had MS and ended up on medicaid----and eventually ended up in a nursing home just 6 years after the MS diagnosis----she had an aggresive--progressive form of it / or she had something else in addition to her illness, but due to the sub standard care she got we will never know. She died of sepsis due to neglect---at age 41. I visited every week and she constantly complained to the nursing staff that she needed her Foley catheter cleaned out. There is no doubt that the infection started with that.

I have seen other cases with neglect---but fortunately not as severe...............

Good luck with your Doctors who are trying to help you Ernie.........

Julie :0)